living well with hereditary pancreatitis, type 1 diabetes, and pancreatic cancer​

A coworker just sent a link to me, to today's Fresh Air interview with soul singer Sharon Jones. I'll admit that I hadn't heard of Sharon Jones, or her band The Dap-Kings, before today. But I'm glad I know about her now. Jones was diagnosed with stage II pancreatic cancer in 2013. She had major surgery followed by chemotherapy, but the cancer came back again. She's now back in chemo treatment, but continuing to work hard as a musician, recording and performing, even with her trademark energy and stage presence. There's a new documentary about her, Miss Sharon Jones!, directed by Barbara Kopple.

Although our pancreatic cancer diagnoses are different (and every person's cancer is different), many of Jones's experiences resonate with me. Terry Gross mentions a scene in the film when Jones forgot a few lines while performing. She told the audience she had chemo brain, and Gross says they were all totally with her, accepting and patient. I know that my friends, family, and coworkers feel the same way if I mention that I have chemo brain, but that doesn't ease my self-consciousness about it.

Despite what some doctors still say, chemo brain is real. It's memory loss, it's confusion and difficulty focusing. It makes me feel, in a very real and very personal way, that I am losing bits of my brain every day. I have always been very intellectual and analytical, and I'm not too humble to say that I'm smart. But in the last several months, I can feel that slipping away from me. Shortly after I started chemo in February, I realized that time had started passing differently for me. Sitting in my favorite armchair, reading, watching TV, or just being, I would look up from my dazed reverie and realize it was hours later than I thought. At other times, I would feel each minute repeating over and over, dragging on, but not as though I was bored or antsy. I just had no consistent sense of time anymore. Time was slipping and retreating, then coming back to catch me unawares.

Now, feeling older than I should at 30, I find myself standing in the middle of another room in the house, with no idea what I'm doing there. I think of something I need to do while I'm doing something else, then immediately forget the remembered task once I finish the task at hand. Sometimes I have to think of the same simple thing many times before I remember to actually do it. Just yesterday, I went to work with my husband's keys in my handbag without realizing it. The night before, when we came home together from a doctor appointment, he left his keys in the front door while he greeted our dog. I remember pulling the keys out of the lock, but I have literally no memory of what happened after that or how they got inside my bag. Whatever happened, apparently I immediately forgot.

And I used to be very skilled at multitasking and time management. I used to be able to engage in highly abstract discussions of philosophy and critical theory. Now I have to stretch my brain to stay focused on one simple work task for any extended period of time. And after thinking hard, I often feel tired and headache-y, like I've been squinting at a tiny screen for days on end. I hate having chemo brain.

Jones also mentions in the interview that when she's on stage, the pain is gone, because the energy she gets from performing either masks or relieves it. But she often has to pay for it soon after, maybe even right when she steps off the stage. I certainly know this phenomemon, since I often become unaware of my pain when I'm busy at work or focused on some kind of physical activity. Sometimes I can distract myself from my pain with focused mental activity, but the physical kind seems more effective. Of course, I can't always do physical activity, depending on my pain and other symptoms, but when I can, I often notice somewhere in the middle of things that I can't feel any pain. For example, earlier this week I presented story time at my branch. I had to move furniture to make room for the program on the floor, and then set up my carpet squares, flannelboard, and display books. During my set-up, I had pain off and on, but during the story time itself, as I sat on the floor and projected my voice and jumped and danced around with shakers, I couldn't feel a thing. Within a few minutes after finishing the program, though, as I was packing up and rearranging the furniture, it all came roaring back. And for the rest of the day, I certainly felt the effects of that intense physical activity, as distracting and enjoyable as it was.

At another point in the interview, Jones describes how cancer has changed her. She notes that her hair is gone and her energy is not the same, so when she performs now, she feels like she's a different person. I completely understand what she means. Cancer can't help but change who you are, in superficial details and, I think, in some fundamental way. But they're not all bad changes. Maybe cancer makes you more mindful, more appreciative, better at prioritizing and saying no. Maybe cancer makes you stronger, as our society loves to believe. Maybe cancer makes you a softer, calmer person. But really, no matter what you do, as Sharon Jones says, "the cancer is here."

In the three-ish weeks between my cancer diagnosis and the start of my chemotherapy, one of my sudden preoccupations was hair. Maybe not so sudden, since for years I’ve enjoyed trying different hairstyles and products, searching for inspiration on Pinterest and reading articles on the Curly Girl Method and microfiber towels. But now I was obsessed with finding new ideas for short hairstyles, head wraps, and chemo scalp care. Nothing about my hair was changing yet, but I decided I needed to change it. I knew it would be falling out soon, at least somewhat, and I couldn’t stomach the thought of my thick shoulder-length falling out in clumps. I’m sure I also wanted to mark the change in my sickness and take control of some part of my body. So I went to a salon in Roland Park and got my hair chopped off into a pixie cut.

I had never before felt confident enough in my face to go for such short hair. When I was overweight before, I tried to grow my hair longer or style it fuller, to cover some of the chub in my cheeks and chin. But cancer sucked all that chub away and I found, almost overnight, a much thinner face in the mirror. In fact, in those early weeks when I was getting my port, preparing for chemo, and still dealing with a lot of pain and nausea, I was so dehydrated much of the time that my skin stretched dryly over my jaw, parched and sunken. I knew I looked unhealthy, but I still felt newly beautiful. Thank you, society.

I was pleasantly surprised to find that I loved having short hair. It was so much easier to clean and style, and everything about it just felt effortless and cute. I got used to it pretty quickly, even though I’d always had a habit of twirling bits of my hair around my fingers when I was bored or deep in thought. Short hair was easy, it was comfortable, and it helped me fear my inevitable hair loss less. It worked for me, and it worked really well.

Until it didn’t. Probably four weeks into my chemo, my hair started to change. My scalp got tingly and sensitive, always feeling like I was pressing a cowlick the wrong way, or like I had raging hat hair. A new forest of flyaway hairs sprouted all over my head, like Seussian fluff waving in the breeze. Combing my hair was dangerous, and showers became agonizing. No matter how careful I tried to be washing my hair in the shower, I started losing multiple fistfuls of hair every time. My growing collections of fallen hair on the bathtub rim, and the thick coating all over my palms every time I ran my hands over my head, sickened me. I wasted water just standing in the shower, trying to clean up this tremendous loss. When my hair was dry, it shed constantly, and I had to grab handfuls of flyaway hairs off the sides of my head, to avoid looking like a demented clown. The volume of loss was startling. It was all too visceral.

One day, after another soul crushing shower, I spontaneously buzzed my hair all the way down. I had stepped out of the shower and tried to comb what was left on the crown of my head into some respectable comb over, and got so incredibly sick of it. I pulled out my husband’s Wahl trimmer and the number four attachment, and stared hard into the mirror. Suddenly nervous, I pulled up the YouTube app on my phone and searched for helpful videos. There are actually a huge number of YouTube videos of women buzz cutting their hair, as tutorials or triumphant celebration videos. I watched parts of a few to get the general idea of the best technique (try to do it evenly, in sections, but you can always go back and clean it up), and to get pumped up for my own impending triumph. My heart racing and my hands slightly shaky (although they almost always are, because of my diabetes), I looked myself straight in the eye and buzzed down the center of my head. That first pass was exhilarating, maybe even a revelation. It taught me that I can do something brash and reckless, and that I don’t have to let my illness just make me sad. It also taught me that lady buzz cuts are kind of sexy.

I trimmed and trimmed my hair, shaving off the clumpy mess and carving a patchy field of sparse red tufts. I worked until I was almost late for my acupuncture appointment, then threw on one of the polyester turbans I had just ordered from Amazon and ran out the door. Arriving a bit out-of-breath and frenzied, I told my acupuncturist what I had just done, and pulled the cap off to show her. She complimented the new cut, but I think even if she hadn’t, I would still have felt beautiful and powerful, and least for that triumphant day.

Once, at chemo infusion during the time when everyone wore masks because of the flu outbreak, my nurse stopped abruptly, walking across the suite. When I had walked in that day, I slowly noticed that everyone was wearing masks. It didn't seem odd at first, but then I thought about what it meant that I didn't know to wear a mask, and I felt for a moment that I was in an apocalyptic zombie movie. There was some threat, worse than the usual threat in a cancer ward, and everyone else was protected against it but me. But I still didn't want to wear a mask. I hate those masks, the way they hold your breath in against your face and scratch at your ears. For me, they always make my glasses sit askew and slip around, and if I'm not careful about how I breathe, my breath fogs up my glasses. They make me feel like a doofus, an uncomfortable doofus who can't quite breathe. As it turns out, it was just a couple flu cases among patients and staff that led to the mask proliferation. No one wants to get the flu, least of all cancer patients, so this seemed reasonable. Still, it was hard to see with my breath fog constantly on my glasses lenses, and it's hard to communicate with only your eyes visible.

My nurse stopped, turned, and walked straight over to the nurses' station, where I suddenly noticed that three people were gathered. She gave a long and heartfelt hug to the older man standing there, seemingly holding her breath. I noticed other nurses and techs looking on quietly, and I wondered what was happening. I looked away, sensing that this was a private moment that deserved respect, and there's already such a shortage of privacy in the chemo pods anyway. I wanted to know what was going on, but I also didn't want to know at all, because I could tell it was something heartbreaking.

The hug ended and my nurse stepped back. The man started talking while my nurse wiped her eyes and sniffled. All I could hear was "This was her best year," and my heart sank. His wife had died. She had had pancreatic cancer. The man introduced the two younger people standing next to him, as his daughter and her boyfriend. The woman's eyes looked a bit puffy above her mask, and the man looked uncomfortable. My nurse nodded a lot and seemed to smile behind her mask, and the man mentioned something about visiting. Then the three people left and my nurse stepped behind the nurses' station, and everything quickly returned to normal.

Death doesn't happen that often in these chemo suites, but pancreatic cancer still has one of the lowest five-year survival rates at only 8%. I've often wondered what it's like for these nurses and techs to care for people who are so sick, and facing such rough odds. They see us come and go, weekly, monthly, and they monitor our progress with stats and intuition. They see in our lab results that our platelets or white blood cells are low, but they can see in our faces that we're depressingly fatigued, in our thin frames and pursed lips that we can't eat, in our wrinkled brows and tense shoulders that we're in pain. How much does this pain them? I heard on the radio recently that ICU nurses report the highest burnout rate of all health care professionals. I wonder where oncology nurses fall on that spectrum. I wonder, also, how much they think of us when they go home, or when we take an extra week off and they haven't seen us in a while. And when we die, how do they get over the fear that yet another patient will die? Do they miss our family and friends and wish they would visit after we're gone?

Tonight, for the second time, I attended a local event put on by an integrative wellness center, hosted by a yoga studio. It’s a gathering of several practitioners, with their tables circling an altar in a large open space, and clients drifting in and out. The proceeds go to a different local nonprofit or community organization each time, which can really mean a lot here in Baltimore. At both of these events I've attended, I’ve been struck by the peace, the gentleness, in a room full of people gathered together for healing.

The only light comes from candles and the summer sunset, someone plays a singing bowl every few minutes, and the whole room smells like burning sage. There are crystals and essential oils scattered over a blanket on the altar, with meditation cushions surrounding it. People filter in and wander to a spot around the altar, then pick up a crystal or two or add their own, rub a little of an oil into their hands, and quietly rest in this circle until it’s time for their session. It’s calm. Everyone whispers. Everyone smiles slightly at each other, but no one tries to make conversation. We just let each other be. This is one of the most comforting and caring environments I’ve ever experienced. It feels like a place, a space, a moment where I can really heal.

The practitioner I’ve seen both times does integrative body work, which I don’t understand, but which I appreciate greatly. In the simplest terms, it’s a gentle massage. Maybe one could even call it a laying on of hands. Her hands are warm with energy, and I can feel it vibrating, almost shimmering. She holds my skull or swivels my arm within my shoulder joint, and I shift, for those few moments, into a different plane of awareness. It’s like simultaneously being fully present in my body and fully surrendering my body. I try to concentrate on my breathing and stay mindful in each moment, sensing my energy as she moves it around. This makes me feel totally focused on my physical self, every sensation of my flesh and blood. But in order for her to move and heal my energy, I have to let go of my own muscular agency, I have to let her pick up my leg and move it independent of my own physical will. This double consciousness is incredibly helpful to me.

In Eve Ensler’s memoir, In the Body of the World (which I will quote continually), she describes how cancer brought her into her own body, and pulled her away from her coping mechanism of detaching her mind and emotions from her physical self. Suddenly, she could not help but be aware of her body. Suddenly, she had to learn her body, pay attention to it, take care of it, and sometimes watch it wither in severe sickness. Her writing is shockingly visceral, and she does not shy away from the often gruesome realities of advanced uterine cancer.

I first read this book in the summer of 2015, before my own cancer diagnosis, but in the middle of the string of complications that led up to my diagnosis. Pancreatic pseudocysts, several painful endoscopic procedures, jaundice from a blocked bile duct, and the eventual metastasis of my cancer into my liver (masked at first by liver abscesses that landed me in the hospital for a week) left me feeling lost within my pain. I was hyperaware of my own physicality, but scared of it at the same time.

Maybe, when you have chronic illness from a young age or for a long time, you become adept at tuning in to your body. I have trouble remembering any time in my life when I did not know exactly what my pancreas felt like, deep inside my abdomen, or when I could not identify and describe the exact nature of my pain. Unlike Eve, I sometimes felt too present within my body. But this bodily awareness did not inherently mean I was mindfully present, or that I tuned in to my body with love and compassion. Often, it has meant that I fixate on negative or painful physical feelings, and react with anger and self-rejection as soon as I notice them. I habitually tune in to symptoms, not sensations.

So for me to be able to let go of my body while also feeling it on a deeper and more positive level is a true gift. I think it might be my source of healing. I also think there must be a way to access this more often, and on my own. I have not found it yet, but I will report back here if I do.

When I first found out I would have to do chemotherapy, I was terrified. I really had no idea what to expect. All I could think of was childhood memories of that ‘90s movie Stepmom, and images of head scarves, sunken cheekbones, vomiting, and smoking pot. It was only later, after I’d started chemo, that I remembered my childhood best friend’s mother, who died of breast cancer when we were both less than 10 years old. I didn’t know then that she was doing chemotherapy and I had probably never heard the word, but I can now realize that she must have. I have hazy memories of her in her last months of life, thin and weak in a bathrobe with a bald head. Who knows if my memories are even true, but what matters more is that “cancer” and “chemotherapy” conjured dark and scary images in my mind.​Although, a few months before my cancer diagnosis, in the middle of the painful and confusing complications that led up to that diagnosis, I read Eve Ensler’s cancer memoir, In the Body of the World. This book was transformational for me, since it gave me a strong and honest lens through which to view my own experience of illness. Much of it stuck with me, and when I faced the prospect of my own chemotherapy, I remember Eve’s words about her chemo, her port, her infusion suite.

“There is something about getting anything foreign inserted into the body that is both downright creepy and fabulously supernatural.”

This helped me, this made me feel proud of my port before I even got it. This made me feel, in some confusingly feminist way, that choosing to allow this foreign object into my body was a mark of my strength. And then about the chemo itself, her words are brilliant:

Her former therapist told her, “‘The chemo is not for you. It is for the cancer...Chemo will purge the badness that was projected onto you but was never yours...Your job is to welcome the chemo as an empathetic warrior, who is coming in to rescue your innocence by killing off the perpetrator who got inside you.’”

I repeated this mantra to myself as I prepared for my first chemo infusion: “The chemo is not for me, it’s for the cancer.” Before I knew what the Hopkins infusions pods look like, I took my imagery from YouTube videos of people vlogging their chemo days, and imagined myself sitting upright in a vinyl reclining chair, blankets piled up to my collarbone, IV tubes extending from me, and my palms resting face-up on the armrests as I accepted the chemo into my body. I talked to my own therapist about how to handle these vital moments, when the poison would be pumped into my body, and decided to repeat my mantra and visualize the chemo coursing through my veins, winding its way to my tumors, and engulfing them like holy drain cleaner.

At my first infusion, much of that flew out the window. I quickly realized that there was no space for that kind of quiet, noble dignity in Pod G. There was simply too much activity, too many people, too much noise. The outpatient treatment facility at Weinberg, Hopkins’ cancer building, is not state-of-the-art. It’s not even cozy. It’s uncomfortable and awkward and leaves patients feeling exposed and on top of one another. That first day, many people came to sit next to my supremely uncomfortable reclining chair: nurses, techs, a nutritionist, a palliative care nurse practitioner, and probably other people I don’t remember. The time passed pretty quickly. At the beginning, though, as my nurse was setting up my pre-meds, I nervously asked her if I should feel anything as the chemo went in. Months before, when I was in the hospital for what we thought then were abscesses in my liver, the potassium they put in my IV burned through my arm veins. I couldn’t imagine, then, how much chemo would hurt.

But she said, no, I really shouldn’t feel anything and it definitely shouldn’t hurt, especially with my port. One of the advantages of a port is that chemo doesn’t hurt going into large veins, even when the same drug does with a typical arm IV. She told me I might get a little sleepy, I might get a little queasy but probably not because of the pre-meds (Zofran and Dexamethasone, both for nausea), but I shouldn’t feel anything else. And then before I knew it, the chemo was going in, and I missed my crucial, poetic first moments. I think I even forgot my mantra, all five or so hours of that first infusion. It turned out I didn’t need it. At first, chemo infusion was easier than I thought it would be.

For the first two months of my chemo, I was able to hold onto my belief that I could handle it just fine, that it wasn’t really so bad, that it was nice to see the nurses and techs. I quickly became a pro at navigating all the little logistical details at Weinberg: swiping in with my orange card, taking a deep breath when they eased the curved needle into my port, unplugging my IV pole to tote it with me to the bathroom, looking up and smiling at the nurse every hour or so when she came to turn off my beeping IV pump and set up the next bag to drain. I was a #chemosurvivor.

But by April 18th, 11 weeks into my chemo, I really didn't want to be in Pod G. The sounds, the smells were too much for me. It was all rubbing alcohol, industrial plastic, and heparin, beeping, obnoxious TV, and fluorescent lighting. I wondered how the nurses and techs could stand spending so much time there. And I was so tired that day, it hit me in the waiting room. All I wanted was to be in my bed, not those awful "day beds" lining the outer wall of the pod. I just wanted to be with my husband and my dog, listening to the lovely silence in my home.

They scared me that day, too. This tech I'd never met before accessed my port and immediately said, "Whoa, whoa," when she tried for a blood return, frowning at the syringe. She called for my nurse and I asked if it was okay. She said there was a clot, and I looked away and slowed my breathing inside my paper mask. My nurse came over and squinted at my port hookup, but told the tech she could flush it. I breathed evenly and thought about my heart rate while she did, and after another flush, everything was running fine. But still, she did something funny with the tape and it kept pulling just next to my catheter under my collarbone. If I swept the tubing over my shoulder, it sat better and didn’t pull so much.

Starting sometime in early April, any time I thought of infusion or Hopkins or chemo or cancer, I could feel the saline rise up in the back of my throat. It never used to bother me, for, say, the first 29 years of my life. But suddenly, every saline flush by IV or port made me queasy. It was like a tickly ache, a sticky dryness, a sickening fur of chemicals on the back of my throat, and I couldn’t get rid of it. Maybe it was actually the heparin, I didn’t know. Whatever it was, I hated it.

And then after a couple hours of being poisoned, the pod started to smell like tacos, like ground beef and powdered taco mix. They let everyone bring in outside food, so the pod randomly smells like Balducci's salads and fried fast food, and that day, cheap homemade tacos with cold flour tortillas from a plastic package. It was vaguely appetizing, but not enough to overwhelm the saline-heparin fuzz. I really hated that place that day.